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dc.contributor.authorPandian, Vinciya-
dc.contributor.authorHopkins, Brandon S-
dc.contributor.authorYang, Christina J-
dc.contributor.authorWard, Erin-
dc.contributor.authorSperry, Ethan D-
dc.contributor.authorKhalil, Ovais-
dc.contributor.authorGregson, Prue-
dc.contributor.authorBonakdar, Lucy-
dc.contributor.authorMesser, Jenny-
dc.contributor.authorMesser, Sally-
dc.contributor.authorChessels, Gabby-
dc.contributor.authorBosworth, Barbara-
dc.contributor.authorRandall, Diane M-
dc.contributor.authorFreeman-Sanderson, Amy-
dc.contributor.authorMcGrath, Brendan A-
dc.contributor.authorBrenner, Michael J-
dc.identifier.citationAmerican Journal of Otolaryngology 2022; 43(5): 103525en
dc.description.abstractTo investigate perspectives of patients, family members, caregivers (PFC), and healthcare professionals (HCP) on tracheostomy care during the COVID-19 pandemic. The cross-sectional survey investigating barriers and facilitators to tracheostomy care was collaboratively developed by patients, family members, nurses, speech-language pathologists, respiratory care practitioners, physicians, and surgeons. The survey was distributed to the Global Tracheostomy Collaborative's learning community, and responses were analyzed. Survey respondents (n = 191) from 17 countries included individuals with a tracheostomy (85 [45 %]), families/caregivers (43 [22 %]), and diverse HCP (63 [33.0 %]). Overall, 94 % of respondents reported concern that patients with tracheostomy were at increased risk of critical illness from SARS-CoV-2 infection and COVID-19; 93 % reported fear or anxiety. With respect to prioritization of care, 38 % of PFC versus 16 % of HCP reported concern that patients with tracheostomies might not be valued or prioritized (p = 0.002). Respondents also differed in fear of contracting COVID-19 (69 % PFC vs. 49 % HCP group, p = 0.009); concern for hospitalization (55.5 % PFC vs. 27 % HCP, p < 0.001); access to medical personnel (34 % PFC vs. 14 % HCP, p = 0.005); and concern about canceled appointments (62 % PFC vs. 41 % HCP, p = 0.01). Respondents from both groups reported severe stress and fatigue, sleep deprivation, lack of breaks, and lack of support (70 % PFC vs. 65 % HCP, p = 0.54). Virtual telecare seldom met perceived needs. PFC with a tracheostomy perceived most risks more acutely than HCP in this global sample. Broad stakeholder engagement is necessary to achieve creative, patient-driven solutions to maintain connection, communication, and access for patients with a tracheostomy.en
dc.subjectCrisis Standards of Careen
dc.subjectHead and neck canceren
dc.subjectHealth care professionalsen
dc.subjectHealthcare accessen
dc.subjectPatient experienceen
dc.subjectPatient-centered careen
dc.subjectQuality improvementen
dc.subjectResource scarcityen
dc.subjectRespiratory care practitioneren
dc.subjectRespiratory therapyen
dc.subjectSpeech-language pathologyen
dc.titleAmplifying patient voices amid pandemic: Perspectives on tracheostomy care, communication, and connection.en
dc.typeJournal Articleen
dc.identifier.journaltitleAmerican journal of otolaryngologyen
dc.identifier.affiliationImmersive Learning and Digital Innovation, Johns Hopkins School of Nursing, Baltimore, MD, USA..en
dc.identifier.affiliationOutcomes After Critical Illness and Surgery (OACIS) Research Group, Johns Hopkins University, Baltimore, MD, USA..en
dc.identifier.affiliationFamily Liaison, Multidisciplinary Tracheostomy Team, Boston Children's Hospital, Boston, MA, USA..en
dc.identifier.affiliationMTM-CNM Family Connection, Inc., Methuen, MA, USA..en
dc.identifier.affiliationCritical Care Division, The George Institute for Global Health, Sydney, NSW, Australia..en
dc.identifier.affiliationGraduate School of Health, University of Technology, Sydney, NSW, Australia..en
dc.identifier.affiliationDepartment of Otolaryngology, Head and Neck Surgery, The Cleveland Clinic, Cleveland, OH, USA..en
dc.identifier.affiliationDepartment of Otorhinolaryngology-Head and Neck Surgery, Albert Einstein School of Medicine/Montefiore Medical Center, Bronx, New York, NY, USA..en
dc.identifier.affiliationGlobal Tracheostomy Collaborative, Raleigh, NC, USA..en
dc.identifier.affiliationCincinnati Children's Hospital Medical Center, Cincinnati, OH, United States of America..en
dc.identifier.affiliationJohns Hopkins University School of Nursing, Baltimore, MD, USA..en
dc.identifier.affiliationTracheostomy Review and Management Serviceen
dc.identifier.affiliationManchester Academic Critical Care, Division of Infection, Immunity and Respiratory Medicine, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, United Kingdom..en
dc.identifier.affiliationMemorial Regional Health System, Fort Lauderdale, FL, USA..en
dc.identifier.affiliationAnaesthesia & Intensive Care Medicine, Manchester University Hospital NHS Foundation Trust, Wythenshawe, Manchester, United Kingdom..en
dc.identifier.affiliationDepartment of Otolaryngology-Head & Neck Surgery, University of Michigan Medical Center, Ann Arbor, MI, USA..en
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